Adaptation of a guided low-intensity behavioral activation intervention for people with dementia in Sweden: a qualitative study exploring the needs and preferences of key stakeholders

Background Despite depression being prevalent in people with dementia, contributing to negative health outcomes and placing increased burden on individuals and family members, access to psychological interventions is limited. A potential solution is guided low-intensity behavioral activation, supported by informal caregivers and guided by healthcare professionals. However, it is necessary to adapt interventions to meet the needs and preferences of key stakeholders to enhance acceptability and relevance. Study objectives were to: (1) explore needs and preferences concerning the content and delivery model of the guided low-intensity behavioral activation intervention; and (2) adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers in Sweden. Methods Semi-structured interviews and focus group discussions were conducted with key stakeholders, including healthcare professionals (n = 18), community stakeholders (n = 7), people with dementia (n = 8), and informal caregivers (n = 19). A draft of the written low-intensity behavioral activation intervention and a description of the proposed intervention delivery model were provided to participants. Open-ended questions explored the perceived relevance of the intervention, alongside needs and preferences concerning content and delivery. A manifest content analysis approach was adopted. Results Content analysis resulted in three categories: Content, Delivery procedures, and Illness trajectory. Results highlighted a need to consider the intervention Content via increased cultural adaptation to the Swedish context, and increasing the inclusiveness of intervention content. Delivery procedures were identified as needing to be flexible given the unpredictable nature of caring for people with dementia, with the provision of additional guidance to informal caregivers supporting the intervention. Illness trajectory was viewed as essential to consider, with the intervention regarded as suitable for those early in the dementia trajectory, alongside a need to reduce workbook text to minimize burden given dementia symptomology. Conclusions The intervention and proposed delivery model were generally well received by all stakeholders. We were able to identify key adaptations to enhance cultural appropriateness, relevancy, and acceptability for a currently neglected population. Results will inform a feasibility study to explore the feasibility and acceptability of the intervention and study procedures to inform the design of a future superiority randomized controlled trial. Trial registration/protocol Not applicable. Supplementary Information The online version contains supplementary material available at 10.1186/s12877-023-04606-6.

People may feel too �red.Or may not feel bothered to do ac�vi�es as they do not feel they will enjoy the ac�vi�es like they used to.Or some tasks may feel much harder to do.Behavioural Ac�va�on helps people with memory difficul�es to start to do ac�vi�es again -a li�le at a �me.

Who is involved in the INVOLVERA programme?
� The person living with memory difficul�es.� A partner, family member, or friend to support the person with memory difficul�es.� A healthcare professional who will provide guidance throughout the programme.
What does the support look like?

Ini�al sessions
The person living with memory difficul�es and the partner, family member or friend has two mee�ngs with the healthcare professional.
At these mee�ngs, the healthcare professional will ask ques�ons to understand a li�le bit more what kind of problems the person living with memory difficul�es is experiencing.
The healthcare professional will also introduce the INVOLVERA programme and the two workbooks.
Between the two mee�ngs, the person living with memory difficul�es and the partner, family member or friend will start to work with the INVOLVERA programme and workbooks.

Weekly support sessions
The partner, family member or friend will have weekly support sessions with the healthcare professional over telephone.The support sessions are designed to help the partner, family member, or friend overcome any obstacles they might be experiencing using the INVOLVERA programme and discuss the next steps.

Final session
The final session of the programme is a mee�ng where the person living with memory difficul�es and the partner, family member, or friend, meet with the healthcare professional.
During this mee�ng, the healthcare professional will help the person living with memory difficul�es and the partner, family member, or friend learn how to con�nue to use techniques from the programme in the future.
The The support programme is designed to help people living with memory difficul�es to live well with memory difficul�es and improve wellbeing.
The support programme is based on a technique called Behavioural Ac�va�on and is delivered through two workbooks.One workbook is designed for the person with memory difficul�es.The second workbook is designed for a partner, family member, or friend.
The person living with memory difficul�es is supported by a partner, family member, or friend to work with Behavioural Activation.The partner, family member, or friend receives guidance from a healthcare professional.
The support programme normally lasts for 12 weeks.

What is Behavioural Ac�va�on?
Behavioural Ac�va�on is a technique designed to help people to improve their wellbeing.
When people experience memory difficul�es they may stop doing many ac�vi�es they used to do.This might be because some ac�vi�es are harder due to memory difficul�es, also people may feel low, and sad, or too �red.
Behavioural Ac�va�on helps people with memory difficul�es to start to do ac�vi�es again -a li�le at a �me.

Who is involved in INVOLVERA?
• The person living with memory difficul�es.
• A partner, family member, or friend to support the person with memory impairment.
• A guidance person from healthcare who will provide guidance throughout the programme.

What does the support look like? Two ini�al sessions
• The person living with memory difficul�es and the partner, family member, or friend has two mee�ngs with the guidance person.
• At the first mee�ng the guidance person will ask ques�ons to understand a li�le bit more what kind of problems the person living with memory difficul�es is experiencing.The guidance person will also introduce the workbooks.
• At the second mee�ng (one and a half weeks a�er first mee�ng) the guidance person will explain how the INVOLVERA programme works and the purpose of the programme

Weekly support sessions
• The partner, family member, or friend will have weekly support sessions with the guidance person over telephone • The support sessions are designed to help the partner, family member, or overcome any obstacles they might be experiencing using the programme and discuss the next steps.

Final session
• The final session is a mee�ng where the person living with memory difficul�es and the partner, family member, or friend, meet with the guidance person • During this mee�ng, the guidance person will help the person living with memory difficul�es and the partner, family member, or friend learn how to con�nue to use techniques from the programme in the future Support Programme INVOLVERA INVOLVERA: Developing a support programme to help people living with memory difficul�es to live well • The descrip�on below is a proposal for how the support programme INVOLVERA could be delivered • This is how the programme was delivered in the United Kingdom • Together with you, we want to develop and adapt the programme for Sweden • We would like to hear your views regarding what you think would be most suitable in Sweden What is the programme INVOLVERA about?INVOLVERA was developed together with people experienceing memory difficul�es and their partners, family members, and friends in the United Kingdom.

Additional file 1
Written summary of intervention delivery model Translated from Swedish intervention descriptions